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I am looking for someone who has had Angioimmunoblastic T cell lymphoma with a relapse after stem cell tansplant

OscarB
Posts: 4
Joined: Jul 2012

Hello all,

I am new to this site. A very good friend of mine has had a relapse of angioimmunoblastic T cell lymphoma after stem cell transplant. He has asked me to find anyone who has had a second transplant and survived. He is recieving RBC's, has liver and spleen involvement. The plan is to start Gemzar and one other chemo I don't know today. If they can get him into remission he will undergo another stemcell transplant. This one would be from a donor.

If anyone out there has experienced this please get back to me. He has big decisions to make and is looking for help (or HOPE).

Thank you all,
OscarB

po18guy
Posts: 237
Joined: Nov 2011

I am being treated for Peripheral T-Cell Lymphoma, another rare T-Cell Lymphoma which is similar to, and treated with many of the same drugs as AITL. It sounds like he has had a transplant of his own stem cells (autologous). Sadly, those are not considered a cure in T-Cell Lymphomas, but rather, a delaying tactic. I know of some on various forums who have had an auto, then gone on to an allogenic transplant. The trick is getting into remission while healthy enough to endure the transplant. T-Cells are aggressive and time is of the essence. We have about two chances to stop them before time simply runs out. It can be absolutely crucial to obtain a second opinion on both diagnosis and treatment, as mistakes do occur. As to treatment, there may be several options. A clinical trial may be the way to go, since they are generally far less toxic than standard chemo and represent the latest in technology. I was in the phase II trial of a formerly experimental drug, Istodax (aka Romidepsin, Depsipeptide, FK228). I have received it continuously since March, 2009. It has kept my T-Cell Lymphoma in hiding, which is very good, since I am not a candidate for an allogenic stem cell transplant. I believe that Istodax may be in clinical trial for AITL.

Doctor has told me, in practical terms, that an autologous transplant essentially resets one's cancer clock, but that clock begins running again immediately post-transplant. The alarm is set on that clock, but no one knows when it will sound. What Istodax has done for me, and others, is to stop the clock. How long it does this, no one knows. In my case, it has been just over three years now. And time is golden, as it allows for additional therapies to become available. As well, the longer it remains in hiding, the less likely it is to arrive for a third time. There are patients who are living from clinical trial to clinical trial.

There are several other treatments under investigation, as well. Here is a link to an information sheet form the Lymphoma Research Foundation: http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/ANGIOIMMUNOBLASTIC11.11.PDF

Second opinion. Clinical trial. The two biggies, in my mind.

OscarB
Posts: 4
Joined: Jul 2012

Dear po18guy,

Thank you so much for the information. It has been a struggle trying to wade through these difficult waters. I have not had a chance to look at the link you sent but I will do that next. I can imagine what you have been through and I thank you for taking the time to reply. I noticed that all of the other posts were getting replies but not me. I was starting to think no one survived this.

God Bless you!

Cathy

po18guy
Posts: 237
Joined: Nov 2011

This is a rare one and you will encounter very few who have it. Yet, nearly all T-Cell Lymphomas are similar in their aggressiveness, the lack of a standard treatment for them, as well as the drugs that are used against them. Your friend has more options than I did, and I have four years into this. He really needs to consult with a T-Cell Lymphoma expert, if he can. These are nothing to mess with, and whatever treatment is decided upon must be immediately effective, or an alternative regimen should be considered. A lot of general oncologists want to throw the standard regimen of "CHOP" at anything lymphoma, but T-Cell Lymphomas may just laugh at it. If the chemo is not effective, it is only helping the cancer to kill the patient.

OscarB
Posts: 4
Joined: Jul 2012

When he was first diagnosed they treated him with CHOP. They are starting Gemzar today. I have not found any info for using this for T cell lymphoma. His doctors have been consulting with his doc from Dana Farber (where he had his transplant) which makes me think that it is a good therapy.
I am waiting for an e-mail from someone at the research foundation on trials that may be good for him. Did you tell what chemo put you into remission? I'll have to re-read your first post.
The big problem will be getting Tom to travel for treatment. Thank you for sharing your journey.

Cathy

OscarB
Posts: 4
Joined: Jul 2012

I'm sorry. Too personal.

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